• Media type: E-Article
  • Title: Ethical Challenges that Arise at the Community Interface of Health Research: Village Reporters’ Experiences in Western Kenya
  • Contributor: Chantler, Tracey; Otewa, Faith; Onyango, Peter; Okoth, Ben; Odhiambo, Frank; Parker, Michael; Geissler, Paul Wenzel
  • imprint: Wiley, 2013
  • Published in: Developing World Bioethics
  • Language: English
  • DOI: 10.1111/dewb.12023
  • ISSN: 1471-8731; 1471-8847
  • Keywords: Health Policy ; Health (social science) ; Issues, ethics and legal aspects
  • Origination:
  • Footnote:
  • Description: <jats:title>Abstract</jats:title><jats:p>Community <jats:styled-content style="fixed-case">E</jats:styled-content>ngagement (<jats:styled-content style="fixed-case">CE</jats:styled-content>) has been presented by bio‐ethicists and scientists as a straightforward and unequivocal good which can minimize the risks of exploitation and ensure a fair distribution of research benefits in developing countries. By means of ethnographic fieldwork undertaken in <jats:styled-content style="fixed-case">K</jats:styled-content>enya between 2007 and 2009 we explored how <jats:styled-content style="fixed-case">CE</jats:styled-content> is understood and enacted in paediatric vaccine trials conducted by the <jats:styled-content style="fixed-case">K</jats:styled-content>enyan <jats:styled-content style="fixed-case">M</jats:styled-content>edical <jats:styled-content style="fixed-case">R</jats:styled-content>esearch <jats:styled-content style="fixed-case">I</jats:styled-content>nstitute and the <jats:styled-content style="fixed-case">US C</jats:styled-content>enters for <jats:styled-content style="fixed-case">D</jats:styled-content>isease <jats:styled-content style="fixed-case">C</jats:styled-content>ontrol (<jats:styled-content style="fixed-case">KEMRI</jats:styled-content>/<jats:styled-content style="fixed-case">CDC</jats:styled-content>). In this paper we focus on the role of paid volunteers who act as an interface between villagers <jats:styled-content style="fixed-case">KEMRI</jats:styled-content>/<jats:styled-content style="fixed-case">CDC</jats:styled-content>. Village <jats:styled-content style="fixed-case">R</jats:styled-content>eporters’ (<jats:styled-content style="fixed-case">VRs</jats:styled-content>) position of being both with the community and with <jats:styled-content style="fixed-case">KEMRI</jats:styled-content>/<jats:styled-content style="fixed-case">CDC</jats:styled-content> is advantageous for the conduct of trials. However it is also problematic in terms of exercising trust, balancing allegiances and representing community views. <jats:styled-content style="fixed-case">VRs</jats:styled-content> role is shaped by ambiguities related to their employment status and their dual accountability to researchers and their villages. <jats:styled-content style="fixed-case">VRs</jats:styled-content> are understandably careful to stress their commitment to self‐less community service since it augments their respectability at community level and opens up opportunities for financial gain and self‐development. Simultaneously <jats:styled-content style="fixed-case">VRs</jats:styled-content> association with <jats:styled-content style="fixed-case">KEMRI</jats:styled-content>/<jats:styled-content style="fixed-case">CDC</jats:styled-content> and proximity to trial participants requires them to negotiate implicit and explicit expectations for material and medical assistance in a cultural setting in which much importance is placed on sharing and mutuality. To ensure continuity of productive interactions between <jats:styled-content style="fixed-case">VRs</jats:styled-content>, and similar community intermediaries, and researchers, open discussion is needed about the problematic aspects of relational ethics, issues concerning undue influence, power relations and negotiating expectations.</jats:p>